Neuromuscular dysfunction or nerve stretch injury
Posted: Thu Jan 14, 2021 6:55 am
Hoping someone knowledgable about PN can give me some guidance.
I'm fairly certain I have PN based on symptoms (unilateral vulva pain and dysaesthesia, constant urge to urinate, groin, perineal and thigh pain on the same side) and have been seeing a physiotherapist who specialises in pelvic pain in London. I have a great deal of muscular dysfunction on the same side as my PN symptoms--my right sacroilliac joint is basically locked and I have lots of hypertonic, sore muscle on that side. However, I'm concerned that I have sustained a nerve stretch injury due to years of chronic constipation and that it's irreversible. I have had slow transit constipation since I was a child. Although I never overly strained, one BM a week was very normal for me. I didn't know any different. I'm currently taking high dose magnesium and eating lots of fibre to combat this natural tendency to constipation (exacerbated by amitriptyline and gabapentin for pain) but am worried the damage to my pudendal nerve has been done.
I'm wondering if anyone else has traced their PN problems to constipation. I'm somewhat confused as to how constipation could cause unilateral PN (I have no symptoms on the left side) but apparently some childbirth PN stretch injuries are also asymmetric. I read an account in medical literature of a man who developed PN after 50 years of constipation but involving hours and hours of straining weekly. I also know pelvic floor dysfunction and PN can cause constipation.
Case history
* 30, female
* October 2019: started experiencing intermittent bladder burning, which became constant urge to urinate on 1 November 2019. Continued despite two courses of antibiotics, negative UTI tests.
* at this point nearly everyone assumes I have IC/painful bladder syndrome and specifically that the origin of these problems is within my bladder. I pursue treatment for that (long-term antibiotics).
* urinary urge is worse after urinating and worse after a bowel movement. I sometimes find I get relief from the bladder urge when I need to have a bowel movement. I think this signal occupies my irritated pudendal nerve, which is usually constantly firing "bladder is full."
* One urologist I saw said he thought chronic pelvic pain (CPP) was a better diagnosis because unlike with bladder-based IC I don't get worse with bladder filling (in fact, I'm worse immediately after voiding) and I don't have frequency/small bladder capacity. I constantly feel my bladder is full but I can hold a significant amount of liquid. It's unclear if I'm diet-sensitive because my symptoms are up and down all the time but I do know that the IC diet never seemed to help the constant urge. There's also a lot of literature contending that most IC patients have an aetiology outside of the bladder and that the organ is just an innocent bystander in neuromuscular issues.
* Bladder pain largely subsided in July 2020 (returned in November 2020) but I couldn't appreciate it because...
* in July 2020 I started getting right-sided vulva symptoms, including some PGAD. These symptoms were uncovered after I slowly (over 2.5 months) tapered down from 20mg of amitriptyline because it wasn't helping my bladder pain. I went back on amitriptyline almost immediately and the arousal symptoms subsided within days but I was left with right-sided vulva pinching, itching, burning, numb pressure. This alternates with deep vaginal aching and occasionally right-sided rectal pain.
* It's thought that I had irritation of the right pudendal nerve, likely caused by the same thing as the bladder pain. Going off amitriptyline merely uncovered these symptoms and now even on a higher dose I can't entirely mask them.
* September 2020: I saw Dr Goldstein in San Diego. They determined my vulva dysaesthesia and pain is coming from my pudendal nerve--either at the spine related to an annular tear or further down in the nerve. Eg. when my vulva was numbed with local anaesthetic, I still felt the zinging itch in the right labia. Didn't have any relief from a spinal epidural block but it's possible I wasn't having enough symptoms that day. I was supposed to go back for further investigations when I better understood my symptom pattern but haven't due to the resurgent pandemic and developments in my symptoms that point more closely to nerve irritation further downstream.
* October 2020: I started physiotherapy in London. Between late October and mid-November, I had a three-week period with barely any labia symptoms. I was able to wear trousers (usually I can't even wear underwear, due to vulva allodynia) for weeks. In mid-November the vulva symptoms recur and the constant urinary urge, which I'd only had occasionally since July, returns. I've had the constant urge, at varying levels since then, along with fluctuating vulva symptoms. I start getting right-sided sitz bone and thigh pain for the first time. Unsure if I've been flared by physio, as PT says is common, or something else.
* present day: continuing to do physio but it's somewhat disrupted due to the pandemic and holidays.
Other points
* Physio has identified one of my issues as being a SIJ joint dysfunction (hypomobility, I think), which I know can cause pudendal nerve shearing/compression between the sacrotuberous and sacrospinous ligaments. I've had years of right-sided low back pain which I now understand is my SIJ joint. I'd often get this pressure build up there and then have to lie flat on my back until something popped. Physio has been concentrating a lot on the right SIJ joint and I've noticed it's been cracking more often.
* I've had intermittent sciatica on the right side (same side as vulva pain) for years and had a major flare up of it around the time my vulva pain started.
* I have admittedly terrible posture, including an anterior pelvic tilt. I also used to stand with my right hip up and left leg bent and sit crooked. I'm trying to fix all this with the physio.
* I've had vaginal sex twice since all this started. The second time in particular my entire right labia, groin and thigh went tingly and numb and I had a terrible flare lasting about a week.
* an NHS physio got me out of this flare for 24 hours by releasing my right obturator internus. Other times physio flares me though, particularly if I have too many appointments too quickly (scheduling has been erratic because of our lockdowns).
* In August 2020, I noticed I was getting lots of right hip pain, which continues to this day.
* Vulva pain can be triggered by sitting. I try only to sit on a pudendal cushion. Bladder pain doesn't seem positional.
* I think I have issues with my genitofemoral nerve too. I'll occasionally get this sizzling burning feeling over my pubic bone on the right side, usually with thigh pain. I went through a 48 hour period when standing or lying down was difficult and being bent over was better, which is apparently common with genitofemoral neuralgia. I wonder if this is pointing to more widespread neuromuscular dysfunction rather than a specific issue with the pudendal nerve.
* No pelvic surgeries. No substantial accidents or falls. Used to cycle regularly but not for years. No extreme exercising. Nothing that could cause an entrapment.
* Before this started, the taps in the bathroom sink where I live stopped working and weren't properly fixed for like 6 months so I had to wash my hands in the tub, having to bend over fairly awkwardly on the right side to do so. I wonder if I messed up something by doing that several times a day for months.
* Haven't had a PN block. Worried about making things worse.
* I'm based in the UK but I also have a US passport and am able to travel there for medical care as well.
Currently, my plan is to continue physiotherapy, hopefully with a more consistent schedule when the pandemic subsides. And if I don't get relief from that to pursue other treatment. My PT says very rarely he has to refer patients to France. I'm not sure what treatment I could receive there though. It seems very unlikely I have an entrapment. I think either neuromuscular dysfunction is causing nerve irritation or I have a nerve stretch injury. It doesn't seem like they can do much for nerve stretch injuries, especially if they are past a certain point.
If anyone more knowledgeable has any idea which one seems more likely based on my symptoms, I'm all ears! Or any advice at all. I feel some relief that I've very likely arrived at the cause of 15 months of pain but I'm terrified it's incurable.
I'm fairly certain I have PN based on symptoms (unilateral vulva pain and dysaesthesia, constant urge to urinate, groin, perineal and thigh pain on the same side) and have been seeing a physiotherapist who specialises in pelvic pain in London. I have a great deal of muscular dysfunction on the same side as my PN symptoms--my right sacroilliac joint is basically locked and I have lots of hypertonic, sore muscle on that side. However, I'm concerned that I have sustained a nerve stretch injury due to years of chronic constipation and that it's irreversible. I have had slow transit constipation since I was a child. Although I never overly strained, one BM a week was very normal for me. I didn't know any different. I'm currently taking high dose magnesium and eating lots of fibre to combat this natural tendency to constipation (exacerbated by amitriptyline and gabapentin for pain) but am worried the damage to my pudendal nerve has been done.
I'm wondering if anyone else has traced their PN problems to constipation. I'm somewhat confused as to how constipation could cause unilateral PN (I have no symptoms on the left side) but apparently some childbirth PN stretch injuries are also asymmetric. I read an account in medical literature of a man who developed PN after 50 years of constipation but involving hours and hours of straining weekly. I also know pelvic floor dysfunction and PN can cause constipation.
Case history
* 30, female
* October 2019: started experiencing intermittent bladder burning, which became constant urge to urinate on 1 November 2019. Continued despite two courses of antibiotics, negative UTI tests.
* at this point nearly everyone assumes I have IC/painful bladder syndrome and specifically that the origin of these problems is within my bladder. I pursue treatment for that (long-term antibiotics).
* urinary urge is worse after urinating and worse after a bowel movement. I sometimes find I get relief from the bladder urge when I need to have a bowel movement. I think this signal occupies my irritated pudendal nerve, which is usually constantly firing "bladder is full."
* One urologist I saw said he thought chronic pelvic pain (CPP) was a better diagnosis because unlike with bladder-based IC I don't get worse with bladder filling (in fact, I'm worse immediately after voiding) and I don't have frequency/small bladder capacity. I constantly feel my bladder is full but I can hold a significant amount of liquid. It's unclear if I'm diet-sensitive because my symptoms are up and down all the time but I do know that the IC diet never seemed to help the constant urge. There's also a lot of literature contending that most IC patients have an aetiology outside of the bladder and that the organ is just an innocent bystander in neuromuscular issues.
* Bladder pain largely subsided in July 2020 (returned in November 2020) but I couldn't appreciate it because...
* in July 2020 I started getting right-sided vulva symptoms, including some PGAD. These symptoms were uncovered after I slowly (over 2.5 months) tapered down from 20mg of amitriptyline because it wasn't helping my bladder pain. I went back on amitriptyline almost immediately and the arousal symptoms subsided within days but I was left with right-sided vulva pinching, itching, burning, numb pressure. This alternates with deep vaginal aching and occasionally right-sided rectal pain.
* It's thought that I had irritation of the right pudendal nerve, likely caused by the same thing as the bladder pain. Going off amitriptyline merely uncovered these symptoms and now even on a higher dose I can't entirely mask them.
* September 2020: I saw Dr Goldstein in San Diego. They determined my vulva dysaesthesia and pain is coming from my pudendal nerve--either at the spine related to an annular tear or further down in the nerve. Eg. when my vulva was numbed with local anaesthetic, I still felt the zinging itch in the right labia. Didn't have any relief from a spinal epidural block but it's possible I wasn't having enough symptoms that day. I was supposed to go back for further investigations when I better understood my symptom pattern but haven't due to the resurgent pandemic and developments in my symptoms that point more closely to nerve irritation further downstream.
* October 2020: I started physiotherapy in London. Between late October and mid-November, I had a three-week period with barely any labia symptoms. I was able to wear trousers (usually I can't even wear underwear, due to vulva allodynia) for weeks. In mid-November the vulva symptoms recur and the constant urinary urge, which I'd only had occasionally since July, returns. I've had the constant urge, at varying levels since then, along with fluctuating vulva symptoms. I start getting right-sided sitz bone and thigh pain for the first time. Unsure if I've been flared by physio, as PT says is common, or something else.
* present day: continuing to do physio but it's somewhat disrupted due to the pandemic and holidays.
Other points
* Physio has identified one of my issues as being a SIJ joint dysfunction (hypomobility, I think), which I know can cause pudendal nerve shearing/compression between the sacrotuberous and sacrospinous ligaments. I've had years of right-sided low back pain which I now understand is my SIJ joint. I'd often get this pressure build up there and then have to lie flat on my back until something popped. Physio has been concentrating a lot on the right SIJ joint and I've noticed it's been cracking more often.
* I've had intermittent sciatica on the right side (same side as vulva pain) for years and had a major flare up of it around the time my vulva pain started.
* I have admittedly terrible posture, including an anterior pelvic tilt. I also used to stand with my right hip up and left leg bent and sit crooked. I'm trying to fix all this with the physio.
* I've had vaginal sex twice since all this started. The second time in particular my entire right labia, groin and thigh went tingly and numb and I had a terrible flare lasting about a week.
* an NHS physio got me out of this flare for 24 hours by releasing my right obturator internus. Other times physio flares me though, particularly if I have too many appointments too quickly (scheduling has been erratic because of our lockdowns).
* In August 2020, I noticed I was getting lots of right hip pain, which continues to this day.
* Vulva pain can be triggered by sitting. I try only to sit on a pudendal cushion. Bladder pain doesn't seem positional.
* I think I have issues with my genitofemoral nerve too. I'll occasionally get this sizzling burning feeling over my pubic bone on the right side, usually with thigh pain. I went through a 48 hour period when standing or lying down was difficult and being bent over was better, which is apparently common with genitofemoral neuralgia. I wonder if this is pointing to more widespread neuromuscular dysfunction rather than a specific issue with the pudendal nerve.
* No pelvic surgeries. No substantial accidents or falls. Used to cycle regularly but not for years. No extreme exercising. Nothing that could cause an entrapment.
* Before this started, the taps in the bathroom sink where I live stopped working and weren't properly fixed for like 6 months so I had to wash my hands in the tub, having to bend over fairly awkwardly on the right side to do so. I wonder if I messed up something by doing that several times a day for months.
* Haven't had a PN block. Worried about making things worse.
* I'm based in the UK but I also have a US passport and am able to travel there for medical care as well.
Currently, my plan is to continue physiotherapy, hopefully with a more consistent schedule when the pandemic subsides. And if I don't get relief from that to pursue other treatment. My PT says very rarely he has to refer patients to France. I'm not sure what treatment I could receive there though. It seems very unlikely I have an entrapment. I think either neuromuscular dysfunction is causing nerve irritation or I have a nerve stretch injury. It doesn't seem like they can do much for nerve stretch injuries, especially if they are past a certain point.
If anyone more knowledgeable has any idea which one seems more likely based on my symptoms, I'm all ears! Or any advice at all. I feel some relief that I've very likely arrived at the cause of 15 months of pain but I'm terrified it's incurable.